Monday, April 15, 2013

Last night, after the pronouncement of Gavin's death, I gave him a final bath. He has always loved his bath and I'd often let him stay in there way longer than he needed because he was so happy. Water in any form was his Heaven. Whether it was a dripping faucet, a bathtub, a baby pool or the big, wide ocean. Bathing him felt loving and motherly and respectful. I always end his baths with a body massage, and last night was no exception. I just wish I heard the giggles again when my hands reached his inner thighs. I then cut some of his hair to bring home. Later, I curled up next to him for our final night together. I buried my face in his shoulder and neck and tried hard to imprint his smell into my brain. I never want to forget his sweet smell. His smooth, fair skin. To me, Gavin was always perfect.

This morning when I opened my eyes and looked at Gavin, I wept. Today was the day I dreaded. The day we would leave the sheltered and protected cocoon of our hospital room and escort Gavin to the operating room.

The day we would finally leave our boy and go home.

As the clock ticked, we waited anxiously for word about matches for Gavin's organs. Soon we were given wonderful news. There was a match found for his liver. A three year old little boy from Texas. Ed and I agreed that thinking about the little boy's parents getting the news brought us such comfort... and it made us so proud. They were also working on a match for his kidneys - and told us that it was possible that both kidneys might go to one person.

The clock continued to tick and my anxiety began to climb. The thought of giving up my child's body - similar to how I handed over my sweet Darcy Claire's body after she was born - made me want to vomit. So I got busy. I made some funeral arrangements... I combed through readings and poems... and I paced.

Tick... tick... I could feel my heart beating out of my chest. I watched Ed crawl into bed with Gavin and weep. The three of us had our final group hug. The anxiety grew.

They told me it was thirty minutes until they would come up to get him. I had an idea. I quick put a call in to the Child Life department - to Jen, who was incredible the day Brian came in - and told her I needed her help. And fast. I asked if she could make a big sign for me that I could tape onto Gavin's bed. "It's kind of hokey, probably, but it will make me feel better," I told her. I explained what I wanted and she MORE than delivered.

Tick... tock... tick... the minutes passed as seconds and they were there. A whole group of surgeons waiting to take our son. I walked out into the hallway, closed the door and pointed to a picture of Gavin standing tall and proud.

"This is Gavin. Our son. He just started to walk, you know. That wasn't supposed to happen. And this is his brother, Brian, who loves him very much. Please take good care of him."

The group of them respectfully walked into our room and began to prepare him to go.

Next thing I knew, they were wheeling Gavin out of the room. We walked behind slowly and soon heard a slow clap. And as we continued down the hallway we saw doctors... nurses... respiratory therapists... aides... cleaners... all lined up. They were all clapping for our superhero. Ed and I barely held it together - between the emotion and the pride about to burst out of our chest.

We got to the double doors... and with that, we said goodbye.

Ed and I walked back to the room. I scribbled "Do Not Disturb" on paper and taped it to the door. We sat in the empty room in silence. I don't think either of knew what to do - what to feel. We just stayed silent. No beeping monitors, alarms, or the sound of the ventilator that had been keeping our baby alive. Suddenly, the silence was deafening.

We dragged our feet leaving that hospital. It was too hard. Knowing our history there... knowing we wouldn't need to return there like we used to... knowing we were leaving our child's body there and he'd be sleeping in a morgue tonight and not curled up next to me. We went to the gift shop and bought hanging butterflies to use somewhere at his funeral. And we made our last visit to the chapel. I visit that chapel and write in the prayer concern book every time we're in the hospital. Sometimes I write a request... but often times I write a thank you. Like when Gavin sat up for the first time alone - on the altar in that very chapel.

Walking into the house was so difficult. The first thing I saw was his wheelchair. Next, his shoes. On the island was the Big Mac switch that I had ordered so excitedly a week before. Gavin had just started making progress in trying to communicate. I swallowed the lump in my throat as I simultaneously felt my heart leap for joy once I saw Brian. He smiled nervously... then looked behind me and said, "Daddy?" I said yes, he was home, too! Then he said, "And Gavin??"

It's going to be hard.

We did a lot of playing, doing puzzles, hugging, hide and seek, kissing, playing and both catching up with and smothering Miss Sara with our thanks. And then the phone rang. Ed motioned to me that it was the transplant coordinator with news. The two of us got extremely flustered as we grabbed paper and pens and tried to figure out where we should go to talk. We decided to run down the basement and put her on speaker phone so Brian wouldn't overhear. Ed and I were a wreck.

The news she gave us leveled me. The news was similar to a sucker punch to the gut. She explained that the surgeons, upon removing Gavin's liver, discovered that they wouldn't be able to use it. It had a small portion that was not acceptable - which made the whole liver unusable. The little three year old in Texas wouldn't be getting his miracle tonight. We were crushed. It got worse. She told us that his corneas weren't able to be used, either.

We are holding out hope for his kidneys. Both of them are making their way out west and she said she'd update us tomorrow on the status. I couldn't help but feel so disappointed. Which then made me realize that's probably a fraction of how the people who wait on a list for organs must feel. Imagine being told they found a possible match for you... or your child. You'd obviously get your hopes up! Then imagine the crushing blow when hours later you're told it didn't work out.

They did something for us in the operating room. We requested that they take a skin sample and freeze it. Down the road, when there are advancements in genetic testing, Gavin's DNA could be used for diagnostic purposes. And it could also be used for research. Maybe his "undiagnosed genetic syndrome" will end up being named the "Gavin Syndrome" or "Superhero Syndrome." Hey, you never know.

I am trying not to get too wrapped up in the outcome of the organ donation process. It could easily shatter my heart. I have to keep reminding myself of my philosophy about gift giving. That you can't give a gift with attachments. If you give someone a gift and expect that they'll use it... thank you for it... not return it... love it... and they don't... you'll be very disappointed. But you'll also be making the GIFT about YOU. When you give a gift - a true gift - you expect nothing in return. Gavin's gift is the chance of organ donation. There's never a guarantee that it will work. Whichever way it turns out, Gavin is my hero. His death was not in vain.

Through the sacrifice of God's own Son, Gavin's body is complete and perfect in Heaven. I pray for the families that are awaiting the possibility of Gavin's kidneys. And I pray for your family as you grieve and as you honor Gavin's memory. Thank you for sharing him with me... even for just a little while.

Kate, every inch of my being was with you today, as it has been. I felt proud when I read about the hospital staff clapping for Superhero Gavin, as he well deserved. I worried about your coming home. I am so sorry that the organ donation did not yet work out. No matter what, Gavin has done SO much good and made such a tremendous impact on the world, and will continue to do so.

I'm so sorry the liver and corneas were unable to be used. praying the kidneys are a successful transplant. I'm saying prayers for you all during this emotional transition, you have all handled everything with such grace and dignity.

You and your husband are Super Heroes!!! I am in awe of your strength and courage. Your blogging has given other parents the ability to live and carry on in the face of a loss. May God bless your entire family and may you always have your son deep within your heart!

Gavin is welcoming that poor 8 year old from Boston into heaven tonight. My twin sons were baptized this weekend and I couldn't help but pray for your family during the mass, and each night as I have the privilege of being woken up by their cries. Thank you for reminding me of what matters in life as you share your wonderful family with us.

Thank you Kate and Ed for sharing your perfect little boy with the world and letting God work through him and you to reach us. Thank you for being such unbelievable, shining examples to us in facing pain and adverse circumstances with a gracious heart. You both have bravely embraced the pain and saw the opportunity for life. I have cried all weekend as I have asked everyone I know to pray that you both and Brian would be enveloped in peace, love and somehow even some joy in the midst of this excruciating pain. I am so very excited for Gavin and at the same time in so much in pain for you and Ed. You both have made a forever impact on me, my husband and our Caleb, our perfect angel. We will never be the same as well. Dana Belcher

You and your wonderful family have touched so many people in this difficult time. There are so many of us thinking of you and hoping that all your warm, wonderful memories comfort you in this difficult time!

I have been following your blog for a few months now. I read all your previous ones to catch up and fell in love with your boys!!! Reading about Gavin and how you and your husband have dealt with his death has been remarkable. To think of others during your time of loss is such a selfless thing. I continue to pray for your family as you begin to process your loss. I hope you continue to keep Gavin's memory alive. What a blessed boy to have the parents that God gave him.

Dearest Kate, Ed and sweet Brian, you have touched my heart and I will never be the same after having been invited into your lives through your blog. Gavin has left an imprint forever. Your bravery and honesty throughout is beyond inspiring. I am weeping for you and can feel a pit in my stomach from the loss of your little man. Please forgive that I am not the best writer :)I just needed you to know you are an inspiration to so many mommies and Ed is an inspiration to daddies everywhere :) Brian is going to be so thankful that you documented this part of his brothers life so that he can look back on it when he is older and realize just how loved his family is. You and Ed and Brian will continue to be in my prayers for strength and peace, and I am sending up love and hugs to your sweet superhero. xo

I have read and enjoyed your blog for quite a few months. I have adopted a special needs child and you have been an inspiration to me in many ways. I have also experienced the death of another special needs foster child whom I had cared for most of his 2 years of life. I will be praying for your family in the coming weeks and months as you learn to live without his physical presence and help Brian understand the loss of his best friend. Hugs from KY.

Kate, This is my first post to you, but you and your family have been on my mind for days. I am so so sorry for your loss. You and your husband are truly inspiring. I wish you comfort in your grief and peace in your future without Gavin.

I'm weeping for you. I don't know you, but I just want to sit and hold you. Thank you for sharing your amazing little boy with all us; for putting your heart and soul out there for all of us. Your family's journey has forever touched me. My heart and prayers are with you all. Fly high, sweet Gavin, fly high. xoxo

Praying for so many things for your family. Praying for peace, strength, wisdom, happiness, grace, mercy, and rest. Each of you are doing great work for the Kingdom and I will continue to keep you all in my thankful prayers. I am grateful for His promises and YOUR FAITHFULNESS. May you all be abundantly blessed.

I found your blog today through Momastery and immediately began reading your posts. I watched the video you made for Darcy and was amazed by the strength you and your husband showed. I realize it isn't a strength you ever wanted to have to muster, but by telling your family's story, you are sharing your strength with many.

And now, I have read of the loss of your dear son, Gavin. And, again, I am struck by your strength and immeasurable love for your children and for one another. I am so sorry that you are facing yet another loss. I know there is nothing I can say to lessen your pain, but I will pray for you and for your family as you navigate what are surely to be some difficult days ahead.

I've only just found your blog, through Ellen at Love That Max. My son died in 2011. Even knowing similar pain, it's hard to find the right words. My heart just goes out to you. I'm sending love and strength. You are an amazing momma. I wish I could give you a big real life hug. Blessings of Peace.

So many tears, weeping for sweet Gavin. Thank you for sharing Gavin with all of us. You are precious. As a mom, I can't imagine the emotions you are experiencing. I can only pray and ask God to help you and your precious family. Yes, Gavin, you are a superhero, sweet boy. And your mama and daddy are, too. Much love.

I have only today found your page and all day long I wept with you and your precious husband. I cannot imagine what you have been through, but what you have shared has forever changed my life and reminded me how very blessed I am to be a mother, and how I will work more diligently at making every moment count. I ache for you and I weep with you and I am POSITIVE that there will be times that I will change my behavior or improve my direction because of your precious boy. His little body just wasn't big enough for that great big spirit of his, was it? I guess God has a bigger place, where he can grow and become the angel that God intended for him to be. He must be SO proud of you both. What an honor, thank you for sharing this private and sacred experience with us, with me. You and your family will forever be in my heart.

I discovered you/your blog/your superhero today for the first time. Have been reading the past entries, and crying lots of tears for your loss. Of course I want to send you all the hugs and love in the world - to you, your husband, and your THREE babies. But I also want you to know how impressed I am by your desire to share your son through organ donation. My mother died a few years ago, and when they asked me if they could take her corneas, I refused. She had signed her organ donor card, but after her own health issues and a lengthy surgery, the only part they figured they could use was her eyes, and I still refused. I wanted her left alone; they had poked and prodded and hurt her enough, was my excuse. The challenges you and Gavin met, and surpassed, are amazing to me; to many. Just because the parts you hoped were going to live on in him aren't able to, doesn't mean he doesn't live on. We are all moving in form, through form, and out of form. He does live on, now in a new way. Every day, a new way. Maybe a better way to explain it; after reading your story today, I showed my 3.5year old Gavin's picture and explained as best as I could what had happened to him. We talked about your birthday request. After I had said all I wanted to - all I felt she needed - she paused, then told me she would never die. Neither will Gavin. Sending as much love as possible. Thank you for sharing your story, and sharing your sweet angel.

Dear Kate and Ed, As I sit here wondering what to say to a grieving mother and father it comes to mind that nothing I can say will lessen the impact of what you have been through for these last 5 and a half years with your precious son. I just learned of Gavin's story this morning through a friend and when I read of your generous gift of organ donation I felt compelled to write. Your part in Gavin’s journey is over and I can only imagine the enormous sorrow that is in your hearts. It is of little comfort to you, my well intentioned words, but they are all I have. I want you to know that I am praying for Gavin and his comfort. I am praying for you and your family that you hold tight to one another and know that so many are standing with you wishing there was more we could do to comfort you. I am asking God to put a hedge of protection around you and your family and that all of your worrisome needs be met. I am sorry that this tragedy has befallen your family... I really am... I wish that it was in the plan for Gavin to live and fulfill his promise. It does not seem right that this tiny boy should have to endure this or that you should be called upon to bear witness to his suffering. At times like this I can only think that God understands your pain as He was also called to witness the suffering and death of His only son... I will never understand this.. but I will stand as a faithful witness to the eternal love of God and pray that someday that He will reveal the purpose behind all of this. In the meantime I am sending you hugs and all the love your heart can hold in hopes that it will carry you through these long and sad days. If Gavin's short life was for the purpose of giving those of us who want to help in circumstances such as yours, then his purpose was fulfilled in a mighty way. Thank you for sharing your story and for sharing your son in such an amazing and unselfish way. Sincerely, Kathy Heseltine

Your amazing story has touched me in so many ways. I am a member of that amazing team of transplant professionals who you worked with. The path that your family has traveled is unique in many ways but the giving spirit in which you made a decision to give life is all so familiar. My family was put into this very situation 5 years ago on this very day, the same day for Gavin. The decision to donate was an easy one but it was the outcome that I was not prepared for. Like you I had such hope for the people my mother in law could help and when I learned that her organs were not suitable for transplant I was devastated. I laid awake that night thinking of the things I would write in a letter to someone who received her gift. That letter never came to be, but the hope she gave and the gift of her research gift became the biggest blessing of all. You see, your story about Gavin and the hope he has given to other families will truly live on in the inspiration that your message will bring. Some day another mother may be making the same decision and will chose to give because of Gavin. He is my hero in so many ways and you and your husband are just so incredibly special that there are no words to describe. May you find peace and comfort and my continued thoughts and prayers will always be with you. Thank you for helping me get through this 5th anniversary with hope. Peace and love

Tonight I was led to your blog by a mother I know through other friends. Her son is alive because of 2 multi organ transplants. His life is a blessing to the world, as are the organs he received. The families that donated their children's organs gave Angel life. I sobbed out loud at your story, your last moments and your loss. But I applaud your decision for organ donation. Your baby is indeed a superhero, as are you and your husband. Tonight I am standing and clapping, my ovation to Gavin's life, and your love. May God hold you through this time of great despair and may Gavin fly on angel's wings, hovering over all of you....all the days of your lives. xoxo-Rae (upland, california)

I am so deeply sorry for your immense loss. I found your blog today though a link that a friend posted on her facebook page. I have cried deep tears of sorrow as I read the account of the doctors and nurses and staff lining the halls and clapping for your son's life and the willingness to donate and give life to others. I think your perspective about gift giving is right on and so wise to cling to at this fragile time. I pray that you and your family receive the comfort you so desperately need in the road ahead.

I am so sorry ... I can't even imagine the pain that you and your husband are going through right now. Both of you, your precious little Brian and of course, Gavin, have all been in my thoughts nonstop these past few days. It breaks my heart to think about what you have been going through. You guys are amazing ... thank you for sharing your story with us.

I only just heard about your story a week ago. I am so so sorry to hear that Gavin didn't make it. Gavin is still a super hero. He gave YOU the gift of life. Out children do that. They make us feel alive (yes exhausted and overwhelmed) but alive. My thoughts are with you and Gavin will never be forgotten xx

I am so sorry for the unfathomable loss your family has to encounter. Yet I feel privileged that I got to know your amazing son and follow his milestones, even though only online. My heart has been extremely heavy for you through your out-of-the-blue hospital stay and your precious family has been the first thing on my mind each morning and the last every evening. I am a special needs mom myself and I look up to you and our husband in more ways than I can describe here. The gift of organ donation that you gave, the gift Gavin gave, is one that makes great difference, despite the outcome. Think of the publicity your blog has reached. You've described this ultimate gift of love with such grace that I am sure it helps people in similar situations and not sure about what to do to make the decision. Gavin has done more good things during his short life than most of us ever will. I'm still thinking about your birthday request and will definitely do something in Gavin's honour when I think of the right way(s). His death was definitely not in vain and he is, indeed, a superhero. He will be greatly missed and never forgotten. Love all the way from Finland

I think we all know where Gavin got his superhero genes from: his mommy and daddy. You guys are grace-filled, faith-filled, real-life superheros. My heart aches for your family tonight, lifting up prayers for peace amidst the pain, and healing amidst the brokenness.

I write this from Melbourne , Australia with tears streaming down my face. have shown your journal to my 13 and 15 year old kids and hugged them tightly. What an inspirational little boy, indeed what a superhero. And words for the courage and bravery of your and your family are truly hard to express. I'm thinking of you and sending much much love across the oceans.Nikkix

I don't know you, but feel so proud of you anyway for being such graceful, loving parents. What a beautiful goodbye (one of many more to come). And what incredible courage and generosity you showed in offering Gavin's organs.

The gift you are giving of raising awareness about organ donation is a gift that will just keep on giving. I made it clear to my husband tonight that if anything should ever happen to me, please be sure that they take anything that can be used. And if the unthinkable should ever come to pass in the lives our kids, I know now that organ donation will be the route we will choose.

My heart is breaking for you. My heart is full of admiration for you. And I feel such love for you and your family, even though we have never met. I will never forget the day you private messaged me with the news that Gavin had taken his first steps - before you posted it for the world to see, just because on the other side of the ocean from you I was going to go to bed and I was desperate to hear the 'news' you'd hinted at a few hours earlier before I slept. There are so many moments you have shared that I will never forget. Your journey has changed my life as it has changed so many more.

Kate, Ed, Brian, and especially Gavin ... you are all in my heart, forever.

Kate, My heart is breaking for you and your family ... i can't begin to imagine the pain you must be going through. I also can't begin to understand where you find the courage and grace to think and write the way you do. You and your son and your family are a true inspiration. Thank you for letting us share in your journey and heling me be that little bit braver in living my own life. My thoughts and prayers are with you, Philippa

I have no idea ho it must be to live with such joy and such pain, to write so eloquently when your heart is split asunder. I can only let you know that I am thinking of you all, and your precious superhero.

Kate,As always, your write with grace and dignity. My heart goes out to you. for those of us with 5 1/2 year old children, or children of any age, as we read your blog, we turly feel your pain. The fact that Gavin is giving the gift of life is what is most important. Even if his organs are not matched you will never know how many other choose donation because of Gavin and your and Ed's choice. Paying it forward by encouraging others to make the same decision is a tremendous gift.

Kate,I only discovered you and your family in the last week and a half. I have wanted to write something ever since I first read your story, but have been left without knowing what words to say. I still have none. Only that I am in awe. I pray that if I were faced with a similar situation as you and your husband have been faced with, that I would handle it with the same courage and grace and selflessness that you all have. Gavin was so lucky to have been a part of your family and now he is your special angel and will always be with you.

I have only been following your blog for the past few days. My heart is broken for you. I couldn't even blog last night, my heart was so heavy. Thank you for sharing your story and your son with us. He is saving lives with his organs! He is a superhero! I will be praying for you as you grieve and go on with your lives. Again, I am so very very very sorry and I am so sad for you and your family! Love and prayers !

sitting here at work crying for you. Thank you for sharing your little boy with us, and with those who may use his organs. His death is not in vain, he has inspired the world over! God bless you all, mom, dad, and Brian. xoxo

You and Ed are inspiring to all of us who try to be the best parents that we can be. You love your children unconditionally, just as God made them, which is what we should all strive for. As you learn to navigate life without Gavin's physical presence, take comfort in knowing that he is always with you. He was an amazing little boy, and he was lucky to be given the gift of your family and your love. You saw him through his journey in the most beautiful way imaginable, and I know that he is in heaven telling his brother and sister about their awesome mom and dad. You will all be reunited again someday as a family. Until that day, continue to live your life with the grace, strength and love that you have shown over these difficult days. May God's grace and love grant you some peace in the days to come.

I am a mother of a child who have biliary artesia which one day will lead to needing a liver transplant. Your act of kindness in such a painful time for your family is amazing. Sorry to hear his liver couldn't be donated. But thank you!

Never in my life have I been so touched by someone I have never met. I can't explain it, but your little man Gavin, and your whole family havebeen etched in my heart. I wish there was something I could do for you. Would have loved to been in that hospital hallway cheering all of you on!!You have made me really examine my relationship with my children and have made me want to be a better mother. Your children have been blessed to have you two as parents......I ache for you but also am happy that you were able to provide such love to someone who really needed it.I will find a way to remember Gavin to enrich the life of someone else.God bless and I will never forget you!

Kate - I'm a new follower to your blog. I started reading when Gavin got sick this last time. To say my heart is breaking for you would be a huge understatement. I don't know you, but you and your husband are my heroes. Everything that you have been through over the course of your marriage and you are still holding it together and giving all the glory to our Heavenly Father. Amazing. Simply amazing. I lost my 5 year old son 41 months ago (yesterday) and at least once a day, I question God's plan for my life and my son's. Anyway - please know that I have said a prayer for you, Ed, Brian and the rest of Gavin's family and friends. Gavin is free and I hope that brings y'all peace.

Thank you for sharing your story... although Gabon's liver could not be shared, I am sure that the hundreds/thousands of people who are praying for you and your family are also hoping and praying for the three year old who is in need...Your super hero is sharing his prayers...

As a fellow parent of a child with special needs I sit and weep with you and yet my heart smiles with the immense love you shared with everyone on your blog. Thank you for making Gavin a Superhero to so many!

April is National Donate Life month. As a tribute to this family, who has touched and inspired so many lives, I have changed my Facebook profile picture to the "Super Gavin" picture which Kate posted above. I hope you don't mind, and I hope many, many other people do the same!

Dear Kate and Ed,I have never met you, but I have followed your blog for years. Thank you, thank you for sharing your sweet, wonderful family with me. The scripture, "well done my good and faithful servant" comes to mind both for your sweet Gavin, but also for you and Ed. Amidst the searing pain and heartache, I hope you can find comfort not only in the hope of Heaven (thank you, Lord) but in the fact that you can look back on Gavin's years here on earth with no regrets. You gave your all, hoped your all, expected your all, cherished your all and loved your all for him. I am so terribly sorry for your loss but also amazed and encouraged by your example as wonderful parents. May the Lord bless you with his grace and peace and even joy in the days ahead. May He reward you here on earth for the way you cared and loved Gavin. Prayers for Brian too, who has also experienced a profound loss. Hugs and love from Michigan.Sofia

I cannot find the appropriate words to offer comfort for you and your family. Superhero is exactly what Gavin is! I have followed and smiled along with the good times, and prayed and wept with the sad times. I wil say thank you for sharing your journey with us, and that your strength and love is remarkable. Take care of yourself, Ed and Brian.

He is an amazing gift to all who are touched by his life and his ultimate journey. And the sheer amount of people who signed up for organ donation after hearing about Gavin will save many lives. So he is spreading those angel wings far and wide! Praying for all of you during these first difficult days at home. You all are brave beyond words.

Kate, Ed, and Brian-My deepest sympathies for the loss of your sweet son and brother on this earth. May you be surrounded by the warmth that comes of knowing so many people hold you in prayer.

"When you pray you rise to meet in the air those who are praying at that very hour, and whom save in prayer you may not meet. Therefore let your visit to that temple invisible be for naught but ecstasy and sweet communion." -Kahlil Gibran

My heart breaks for you and your family. I admire your strength, your love,and your faith. Gavin and Brian are so blessed to have you both as parents. You don't know me but please know you and your family are in my prayers, and will continue to be, as you move forward. Gavin is at peace with our Lord. What a joyful reunion it will be when you all meet again. Until then, I pray you find peace.

Kate, I'm sure you and Ed would give anything to have Gavin back and nothing is worth what you are going through. But, I did want to share that because of your story, 2 families I know have developed a loving relationship with God. Your peace and your confidence helped them to find this relationship. Gavin is a superhero, for sure. But you and Ed are ministering to the world - not a job you asked for by any means - but it's happening.

My heart is broken for you. I'm sure that sounds trite by this point, but I have no idea what else to say. I cried all morning for you all. I don't know you, but I my heart is still in my throat and tears are still springing from my eyes. What a sweet family you have. Thinking of you and praying for peace as you mourn Gavin. What a special, heroic little boy.

Crying as I try to tell my children WHY I'm crying. My nine year old reflected, "Mummy, before Malcolm died it seemed like everything was good. But since he died it seems like there's sadness everywhere." I hugged her and told her that children have died sadly even before Malcolm died, but it didn't touch our family in the same way, or make mummy's heart go back to the moments of losing Malcolm.

Thank you for sharing, Kate. Thank you for your selflessness. Thank you for giving us the opportunity to know and love Gavin. Strangely, I only started to get to know him when he knocked our socks off last week by asking to play in the water.

This week will be turmoil and the adrenalin of trying to make everything perfect for his service and those dreaded 'arrangements' will keep you going. (P.S. My experience is that there is no perfect way to convey or honour your child's life without feeling like something is missing....) Please remember that people will not stop holding you up in prayer as the weeks and months go on. You're not alone in this sad journey.

Dear, dear Kate - you are the very best mother, just as you wanted to be. My heart breaks for all of you. Thank you so much for sharing your lives with us. Please keep writing and letting us know how you all are doing. So many of us have grown to love you and would take away a part of your pain if we only could. You will always be in my prayers and Gavin will also continue to be honored ihn my heart as your Superhero.

Dear Kate, I haven't been reading your blog long, but the first time I found it, I read every single thing. You are such a courageous and faithful warrior to both God and your family. I don't know HOW you find the strength to get out of bed in the morning, but I commend you for being SO VERY BRAVE. I was so sad to hear about Gavin. I just want to tell you, that you are going to be so so blessed in Heaven, for living on this earth, suffering the way you suffered, and continuing to declare the works of the Lord. He blesses those who suffer. I know that from experience. GOD BLESS YOU!! You are in my prayers constantly. -Amy

I pray for the right words, but I know that there are none I can say to bring you the comfort I want for you. I recently joined your superhero's journey and want you to know that in the short time I have been "meeting" him the impact of him and your family is priceless for so many. I pray for Brian in his time of confusion that he know the awesomeness and love of his parents and his sweet angels watching over him.

I continue to pray for you and your family. Please know that whatever the result with Gavin's kidneys, his superpowers have reached out to the world and folks who would not otherwise have thought of organ donation for themselves or loved ones will begin talking about it, completing that form on the driver's license, etc. People WILL live through donated organs and it will be directly attributable to you, Ed and Gavin.

Kate & Ed: I just "found" you yesterday. I'm sitting at my desk at work right now with tears streaming down my face. (good thing I face the wall). I will pray for you every day for a long time. Please know that Gavin is having a great time with Jesus today and forever. Jodi in Kansas

I am praying for your family... I was just introduced to Gavin and the family has touched my heart. You said your son was a superhero and he IS but so are you.... in the midst of everything you are worried about how others will feel... my heart goes out to you

Thank You for sharing your family with us. Thank You for showing me that there are people in this world that can move outside their grief and sadness to be heroes. Gavin is a little hero. He learned it form his Mommy and Daddy. You might say he was in the family business. No matter how it works out you give me hope. Hope that more people will learn form you that being a hero is a pretty awesome thing to do. Not an easy thing to do. But so worth while. Prayers for peace and strength.

May you be surrounded by love and sheltered by grace as you grieve the loss of your sweet Gavin. By sharing his story so widely you will have changed the world - hearts will soften, compassion will grow, and parents who will someday face this same unimaginable loss will be inspired to donate and to save another's life. We can all be good and giving when the sun is shining but you and your husband have found a way to be giving in the darkest hour. You are an inspiration. Gavin will be remembered.

Dear Kate, thank you for allowing all of us into your life on a daily basis. I found your blog many months ago and felt a kinship with you as a special needs Mom. Thank you for your candor and integrity in talking about special needs and how you celebrated those little (but HUGE) milestones. Even though we've never met, I felt like I knew you and Gavin and family. Reading about his sudden hospital visit was heart wrenching, and so very painful when you wrote that he would not recover. I am so very sorry for your loss. I am inspired by all Gavin accomplished, and he (and your family) will always have a special place in my heart. Sending peace, love and blessings to you all.Much love, Jennifer, Roswell GA

Kate, so sorry to hear about the organ donation not working out. But those of us who follow you on your blog know that Gavin has already given so much, he has touched people's hearts and inspired us. I pray for you, Ed, Brian, Sara, your mom and family. God choose you and Ed to raise Gavin and you did not let him down. When times are difficult and hard to understand, I was taught to remember "We walk by faith, not by Sight", and Lean not on your own Understanding".

Thank you for sharing your story with all of us. I am awed and humbled by the love you have for dear Gavin. He experienced more love and gave more joy in his short life than many people experience in their entire existence. So much love and prayers for peace to all of you.

I'm crying so hard I can't even catch my breath. I just want you to know that you are all so brave. Gavin is a hero and you are his heroes. I am positive that God has the perfect ocean of water and love just for Gavin. And Gavin can't wait to show it to you all some day.

I am speechless - shaking and crying so hard I can't type. Sweet, beautiful Gavin. I am forever changed by him and his story. I will tell my children about him and what a superhero he is and we will be making a donation to the Child Life center. Thank you so much for somehow having the ability to blog and share with us. I hope to someday be half as purposeful and dignified (those are not the right words, there really aren't words...) as you. So much love to you and your family.

Sweet Gavin! What a precious family and I am so sorry for your loss. We lost our 12 year old son to seizure (SUDEP) 2 1/2 years ago; it brought back so many tears and sadness. You did everything I wish I had been able to do but was unable because I was so distraught and Josh died in our home unexpectantly. I am so glad you were able to spend those final hours embracing Gavin, loving him and gathering such precious handprints. We will be walking this Saturday in the National Walk for Epilepsy in our Joshua's memory. Gavin will be in my heart the entire time. Sending you hugs of strength. Sherrihttp://thenewmans.blogspot.com

It is with tears in my eyes and love in my heart that I write this. In our religion we spread ashes of a loved one in a flowing body of water. The concept behind it is that it all goes into the movement and cycle of life and ultimately makes its way through the world. As soon as you wrote about Gavin's bath I thought of this. Your superhero did something incredible during his short life - he made his way through the world and changed it for the better. Wishing you lots of love in the time ahead.

I've been following your story since Sunday morning, when I was laying on the couch with my five month old son napping on my chest. I held him tight as I wept as softly as I could. I wept for Gavin, for the unfairness. I wept for you, for your loss, for your love for your children. I wept because your love for Gavin is palpable. I wept because it doesn't make sense.

There is nothing I can think of to say to you that would comfort me if our roles were reversed. But Gavin's life has made me determined to be the best mom I can be for my son. I hope I am able to advocate for my son the way you did for Gavin. My son had a brain injury when he was born and we were told to expect a cerebral palsy diagnosis. He's 5 months old and developmentally on track so far, but it's still early. I am touched, deeply, by your grace, by your love, and by your fierce loyalty to that sweet baby boy.

Thank you for sharing your experience. I know that when my son was waiting for a liver transplant, we wanted one so badly for our son, but knew it meant a tragedy for another family. I donated part of my liver to save my son, but leading up to that event he contemplation of his passing was devastating. You have all my sympathy.

My heart is absolutely crushed. I first heard your story only last night on a Parents blog, but I'm praying for you and your family. My son Vincent and I will do a good deed in Gavin's name. I know nothing will soothe the pain and heartache you are feeling as a family, but Gavin's name will live on.

I can envision the clapping scene in my mind, and I know that it's one of the many things that you will hold onto in search of peace and comfort. The ovation will continue for your little Superhero - and for you and your family. I will never, ever forget your words: "Without ever uttering a word, this little boy changed the world." So has his mommy.

Real Hope for Your Loved Ones Who Have Died. All The Bible's resurrection accounts teach us much about the resurrection to come. "Strengthen the weak hands, YOU people, and make the knees that are wobbling firm. Say to those who are anxious at heart: BE STRONG. DO NOT BE AFRAID. Look Your own God will come even with a repayment. He with vengeance itself, God will come and save YOU people. At that time the eyes of the blind ones will be opened, and the very ears of the deaf ones will be unstopped. At that time the lame one will climb up just as a stag does, and the tongue of the speechless one will cry out in gladness. Isaiah 35:3-6

I am so sorry for your loss. The good news is that God promised us hope that after the resurrection your little boy will be alive and healthy. In the meantime may God keep you in his love and strengthen you. God does not and cannot lie. You will see your son soon.

Hi Kate, In a strange chance of fate(searching Google) I stumbled upon your blog today. I don't know you, we will probably never meet, but I felt compelled to write you too and tell you that I am very, very sorry for your loss. I hope your pain lessons, your weight is lifted and you can begin to breathe again. I hope your writing/blogging helps to ease your pain, I hope you can let go of the pain and hold the love in your heart always. I started reading a book this week called "The Invisible Thread." That title is an Ancient Chinese Proverb that reads, "An invisible thread connects those who are destined to meed, regardless of time, place, and circumstance. The thread may stretch or tangle. But it will never break." Gavin's Thread, your thread...they continue to stretch. Sending much love and healing your family's way. Jennifer, Irvine, California

Kate, I was introduced to your blog today by another blogger and I have been here for the past 2 hours reading through every post. I am so very sorry for your loss - I can't imagine what you're thinking or going through at this moment, but just know that there are so many people, including myself, that have you and your family in our thoughts and prayers. Your blog is absolutely beautiful and the happiness and love you have for your family shines so bright. Continue to stay strong for your family - wishing you the best. Natasha

You are so brave. My name is Hope. I went on vacation thinking how imperfect it was but after reading your blog, I feel ridiculously selfish. You are an inspiration to all mothers!!! I have a 9 year old son and I am 45 thinking of having another baby. You give me hope to live for today as tomorrow is not promised. I wish you and your family peace, love and joy but you as I read you already have it. Keep blogging, loving and praying. I will pray for you.

You and your family are the epitome of love, faith and courage. I admire your bravery amidst all the adversity. Your positive, gentle and forgiving nature is beautiful. You and your family are in my thoughts and prayers. I wish you and your family nothing but peace and love in your continued journeys.

I don't know why, but among the many feelings and thoughts that I have been blessed with after reading this blog post (my first time reading your blog) I am leaving here with the whisper in my ear that I must start being more gentle, less harsh. Its all too easy to forget how tender and fragile we are, our spirits, our bodies and I have been too hard on myself and those around me for far to long. All there is is love, how we treat people, how we honor the Creator of it all...the best way to do this is not spend lavishly moments on critique and criticism on moments that are best savored for all of the yummy sweetness, flaws,harmony and discord...the tragic and beautiful mess that it all is. I don't know why this is my take away, but I will never forget what I've read here or the way I imagine your sweet Gavin is awaiting your arrival in the most amazing of playgrounds. Holly

I pray that the Lord continue to bathe you, Ed, Sara and all of your friends and family in grace. Tomorrow, I am going to find some way to pay it forward in memory of Gavin. I don't know how, or what, but I will find some way to honor your son. A million zillion prayers for you all.

This is my first trip to your blog Via Britmums Good Reads and I am just so sorry to hear of your loss. I have sat here with tears in my eyes for you all, he seems such an adorable little boy and my thoughts and prayers are with him and you all. xxx

I have followed your family. I have wanted to write but felt there was nothing I could say that had not already been said. But this evening I read about the joy of Hope. That she has arrived. So Gavin will guide from above ... And spread is love that only he can do. He will be their ... He will guide ... He will leave his gentle spirit with his sister as a new life has been born ... Just like the little one that was left with you when he left. It was his gift to keep you going where you now have another one to share the love. Of Gavin. While he may not have known how babies were made he made sure that you were left with another little one to carry on .. And what big brother wouldn't want a little sister that they could protect ... So from above this little one will have a very special protector ... My love to all of you ... Both on earth and from above ...

Kate,I just found your blog tonight and I have been reading your family's stories. My heart has been so touched and I have cried so much. I just wanted to say that my heart completely goes out to you and your husband. Please know that you will be in my prayers for many days to come. _abbey Phillips

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

Want to know more? Click on each link under the pictures at the top of the page to read our stories...

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can click the donate button (you don't need a PayPal account!) or, if you'd prefer, mail a check made out to CCIU and mail to Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!